My father is in pain and that's what I care about today

by CynthiaYockey on November 4, 2009

Dad is taking a nap but in a few minutes I will wake him up and take him to the rheumatologist, Dr. A (not his real initial). Dad’s arthritis was under control on a daily dose of 2.5 milligrams of prednisone, but prednisone has side effects, like reducing bone density, which concerned the doctor because Dad is 93 and a fall could kill him. I take this seriously because a fall led to my mother’s death in 2006.

However, every time we have tried to go below 2.5 mg of prednisone, Dad has had a flare-up of arthritis, usually in his left hand. So Dr. A and I went several rounds over tapering the dose — I argued against any reduction and pointed to the one-to-one ratio of tapering below 2.5 mg. to a flare-up and having to drastically increase the dose for a few days afterwards. But Dr. A was very concerned over the results of a bone density test — he proposed reducing the dose to 2.0 mg. Finally I agreed.

Disaster followed in about 48 hours. Only this time, the arthritis flared up in both hips and his spine. So a man who could walk comfortably upright was suddenly in agony and stooped over his cane, barely able to walk or get in and out of bed — AND this pain enormously increased his chances of falling.

I already have impressed my dissatisfaction with this turn of events on the nurse practitioner. But, since the increased dose of prednisone has not resolved Dad’s pain, I have snagged a cancellation appointment today with Dr. A.

If you are caring for someone who is elderly and/or dying, here’s are the takeaways: I should have negotiated with the doctor that this would be absolutely the last attempt to taper Dad’s prednisone if the bad result I feared manifested. Also — neither the doctor nor I foresaw that the arthritis could flare up and strike directly at Dad’s ability to walk. We both should have seen that one coming. I want the doctor to see the result of his insistence that we taper Dad’s prednisone so he will know why I will stand my ground to the death in the future.

Speaking of death, when you are making end-of-life care decisions — and that is what this is because Dad is 93 and has other health problems — here’s the thing: you are going to die of something. At the end of life, the choices you make do not determine WHETHER you will live as much as they determine WHAT WILL KILL YOU. I am going to impress on Dr. A that the gradual bone loss due to prednisone that could result in death from a fall is very much preferable to the nearly 100 percent certainty of falling that attends an arthritis flare-up (even one that only affects his left hand, since he has to push up from chairs to get out of them these days).

Cynthia,
Just a note to say I very much enjoy the sharing you do here. I’ve been reading your blog regularly for several months now, and you always speak clearly, sensibly, and compassionately. I have been especially touched by the sharing you’ve done about your own long-time relationship with your recently deceased partner. Keep on sharing as you do, and thank you.
Bruce

What we need is a new movement, a truly bi-partisan coalition including pro-gay churches and synagogues and pro-gay moderates, libertarians, and conservatives, to ensure that gays and lesbians are protected by the law in all matters of equality on the federal level, and that it becomes illegal to put human rights on the ballot.

Cynthia, what do you think about hate crimes laws and the recent Matthew Shepard Act which only passed as a rider to a military spending bill?

I came out in 1972, three years after the Stonewall riots that began the gay rights movement. What we need now is love, not militancy.

What militancy accomplished for us over the last 40 years was to give more gays and lesbians the courage to come out and live their lives as openly gay. So the big transformative effect of militancy was on other homosexuals to bring them out of the closet. But what really makes people support our goals of full equality is loving someone they know is gay or lesbian. I’ll write more tomorrow — one of the kitties needs to be held and so I only have one hand free to type.

Turn up the love.

Cynthia

Stinky

I can relate. I am the primary caregiver for an elderly relative who lives 1000 miles away, and I’ve spent 10 weeks with that person so far this year. And I have my other family back home, waiting for me. This is the third time I’ve been through this, like you with Margaret and your mom. It is exhausting, but if not us, then who, I ask myself? It is simply the right thing to do, if one is able. God bless you and your Dad.

My wife is on a death watch for her mom, who is in a hospice, so I kind of know where you’re coming from. You just hope you can make them comfortable and as happy as possible until the hour of their departure. Hope your dad feels better soon.
.-= Stogie´s last blog ..NY23: Thoughts on Doug Hoffman’s Brave Effort =-.

Rita Casey

I found you through a link at Hillbuzz and visit regularly. (Promise I will make donation by week’s end.) This column touched me enough to make contact to let you know that, like your other fans, I will keep your father in my prayers .
I have enjoyed everything you’ve written.

I sympathize with your situation. It’s difficult and frustrating making sure a loved one gets all that’s best for him or her at a given moment. My father is 91, and was in very good health in every way until this past March, when he had a stroke, and then had a second one in June. He is home with us, where he will stay.

I applaud your looking out for your father, and for staying with him and caring for him. It’s a good thing you’re doing, and it sounds like you’re doing it very well.

I hope your dad feels much better very soon, and gets that pain under control. And I wish for you continued strength and restful times to replenish yourself. Hang in there, you’re doing a good job.
.-= Conservative Pup´s last blog ..Americans Make “House Call” To Congress =-.